Let’s Talk About Sex Baby….

A while ago, I wrote about how we were maintaining the mechanics of still getting it on (much to the disgust of our kids). However, there remained a few things that left the elephant in the room staring at us with “that look”. The joys of Ehlers Danlos Syndrome mean that no part of me isn’t stretchy to some degree and throughout my life, that has had some interesting sexual impacts.

My back pain began in my teens – I remember walking around Sainsburys with my mum doing plies holding onto the shopping trolley to just take the pressure away from my lower back. It was also around this time that I lost my virginity and had the weirdest conversation. Initially, I took it as a compliment that my then boyfriend asked if I was sure that I hadn’t ‘done it’ before. I was clearly a pro…

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But then he argued that it should be tight and hard to ‘get into’ a virgin & I wasn’t. As first times go, this was at least memorable if not massively offensive. For reference boys, this is shit pillow talk and pretty much sealed the deal for me to piss off and date his best mate. 

I spent a good deal of my teens & early 20s tired (I once fell asleep on a base speaker in a club) and back pain continued to twinge. But it really went for it in my early 20s & more so when, aged 24, I carried Beanpole to almost term (she arrived at 35 weeks after medical intervention to keep her in, 16 months later TinyPants plopped into the world at 32 weeks in a similar way). Back then I had “it’s just back pain” & “all women get SPD”. What I didn’t know was that my tendons were stretching through the magic of hormones & had no intention of snapping back up like youthful elastic, preferring the more relaxed overcooked spaghetti look.

The ligaments you see before you hold a woman’s pelvis together. These are strong rope-like connective tissues made up of collagen (That’s the glue that holds us together, and also the tissue that is affected in people with EDS). As we get older, these can get tighter meaning that we lose our range of movement. For me, this means where I could once lay on my back and place my feet square on the floor touching my shoulders, I can now only lick my own feet. Excellent party trick, superb pulling technique, utterly inadvisable.

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So, why the image? What has this got to do with sex?

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Well, with progressively looser tendons, ligaments, & muscles, I caused a number of interesting injuries to my pelvis & spine over the years & by the ripe old age of 36 have racked up herniated discs at s5/S, L4, L3, T4, & C5 alongside having dislocated my pelvis itself and dislodging the SI to an extent that the joint that shouldn’t move does in face shift on a daily basis. Most of these have been treated using rest, anti-inflamitories, and over a decade of opiate based painkillers. I’m thankful for this, having reacted badly to facet joint injections and with surgery not advised with EDS due to complications & healing time. The down side of this is nerve damage. I no longer have real sensation in my feet (as noted when I had to be told that I just tipped boiling water on my foot this year!) and my pelvis is equally affected in the no sense, no feeling category.

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It’s been a gradual decline, but the past 12 months have brought about a requirement to be aware of the sensation of needing to pee which isn’t always obvious. It’s either all or nothing, and by the time I am aware I need to go, it’s often at critical mass. To my utter horror, on a few occasions my body just hasn’t cooperated in being coordinated enough to get onto the loo with pants down pre-release. This is the grim indignity of a body that resembles a car that hasn’t been MOTd in years.
The bladder isn’t the only internal organ affected by EDS that requires evacuation  (look away now readers of a delicate constitution)… a combination of being stretchy & taking opiates has equated to an interesting dance with IBS. There’s very rarely a nice happy regular medium, but more disconcerting is what once used to feel crampy or bloated, now feels nothing. There is essentially no urge to go aside from a thought process that says I ought to. It’s a set of symptoms that once sent my doctors into apoplectic frenzied activity and now appear to be a sign that I’m still holding things together by managing them.

The one thing that hasn’t been discussed with my medical team (and this post is partially me getting my thoughts in order for bringing it up at my appointment tomorrow with Pain Management) is the lady parts.

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Mr Geek & I started off our relationship by necking on his bed & pretty much only left it for essential food & more wine for the next few months. This laid the foundations for the following decade of lusting after each other. He can still make me go all wibbly by biting my lip, or just stroking my cheek. Suffice to say, sex is quite high on our list of marital priorities. So when I began to struggle to enjoy it quite as much as he was, we started to worry. Initially, we put it down to pain levels (Although, actually a bloody good orgasm is a massive pain reliever), and then the cocktail of drugs, but eventually as my legs showed more signs of losing feeling and the ‘saddle’ area around my perineum felt numb, we realised it was nerve damage.
So how do you continue to skew the mean average marital sex figures when you’ve gone from multiple porn like orgasms when he so much as looks at you to struggling to maintain lubrication let alone pull a Meg Ryan. Well, just like every other aspect, we adapted things:

Not everything in life has to be home made & the same goes for lubricant. Water based lubes and my skin don’t mix, but a liberal application of coconut oil (approx. £5 in Tesco / Sainsburys, or posh stuff from Waitrose gives the added amusement of looking them in the eye as you buy it, knowing damn well that this is not for plummy middle class baking, but will be making your genitals taste tropical!) not only works a treat, but smells great too 🙂 It also has a beneficial impact on the tiny tears that I’m prone to where my skin is paper thin.

We’ve had to start again with my body to work out how to get the engine going again. Picking up some good vibrations with a padded vibrator will often do the trick (if you have loss of sensation, do not use a hard vibrator – one word : bruising). Don’t feel bad about needing some individual time with this initially. When you’re already falling apart, navigating 2 sets of overexcited hands can cause things to get lobbed across the room in a strop… whereupon the thing is still quite literally in motion across the bedroom floor. Cue laughter.

Physically, the earth might not move anymore. The muscle contractions remain, as does that lovely flow of endorphins, but what once was a Thunderclap is now muted to a muffled rumble. I won’t pretend that it isn’t upsetting, but I’d rather a rumble than just rain.

Keep the light on. When one sense is dulled, another takes over, and with 90% of my old moves far to painful to attempt, there’s nothing series than seeing Mr Geek get undressed. I’m thinking less with my crotch and more with my mind (yes, women also make decisions using that brain in their pants).

Switch positions. Use every pillow known to man. Make the most of that adjustable bed. If it doesn’t feel good, don’t do it. We’ve surprised ourselves by getting into easier positions for my joints, then discovering that… OMFG keep doing that!

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With all these adaptations, we’re coping well, but there’s still a little voice in my head suggesting that I mention it at pain management and see if they can suggest other ways of adapting our sex life, or even if there’s some magical way that I could resurrect my clitoris Jon Snow style.

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Should I Stay Or Should I Go?

I took the girls shopping yesterday for clothes. “Shop until you drop” consisted of 3 shops & Beanpole pushing my chair as I didn’t have the strength to self propel. And then a nice lady approached me…

I knew who she represented as she tried to give me a bunch of leaflets, and I was just at the right level of pain and tired to fire from both barrels.

She asked me to vote to leave the EU.

The original arguments for & against (before the politicians lost their heads and went apocalyptic)

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But I have grown up as a European Citizen and see myself primarily as European before British. On more than a number of occasions, I’ve been embarrassed to identify as British and when exercising my freedom of movement, do what I can to show that we’re not all arrogant arseholes. Whilst away, I have watched my children play happily alongside other children of French, Dutch, German, & Spanish origin with the language no barrier (the language of loom bands is universal) and have been proud to raise tiny humans who see other humans as just that no matter what colour they are or who they pray to, if they do at all.

As my personal experience of being a European Citizen has been overwhelmingly positive, I had some questions.

Question: If we leave, who guarantees my right not to be discriminated against because of my disability?

Her: Oh, well it then becomes up to us and our government wouldn’t allow it.

Cue raised eyebrows and me giving a few examples of why the current government probably needs the EU tapping it on the shoulder. Eg. In 2009, the then coalition government investigated scrapping the Equality Act which includes things like workplace tribunals insisting that other workers do not face the same or similar discrimination. The EU ensured that most of the act remained, but that particular part was indeed scrapped.

Her: Ah, but did you know that the day after we vote to remain the EU will legislate to privatise the NHS??!

I asked for evidence & she had none, so later I went looking on FullFacts.org for some unbiased research. Here’s what I found. So, yes. IF we allow privatisation of the NHS, and I’m looking square at you Cameron, it may be more expensive to reverse it. However, the bits that the Torys haven’t sold off would be protected. So, actually, the only people we have to fear are our own government who are hell bent on asset stripping everything they touch.

Question: What about the cost of leaving? The figures seem to show that we would pay more per head to remain in the single market?

Her: yes we would have to pay, but we would have control of our exports. Other countries will still buy from us – they’re not so vindictive that they would just stop.

How much would be offset by increased export in this per head figure?

Well we don’t have a figure as business changes, but look at all those French workers protesting and setting fires; we’re paying for them to refuse to work a decent days work. The French revolution happened for a reason…

What? That’s a bit of a leap! But back to the facts, how can you campaign on an unknown?

As I said, our exports will be our own so we can decide how it’s run without interference and they need us more than we need them…

My own research looks worrying. I’m looking for unbiased sources to get facts rather than posturing, so looked to the London School of Economics. Because, it doesn’t get more dry and maths based than accounting.

10% of our imports come from Europe. And we have a trade agreement in place for goods. 50% of our exports go to Europe, again with a trade agreement.
So what happens if we leave?
We have to negotiate new terms.
What are the new terms?
We won’t know until they’re negotiated.

…leaving us in financial limbo.

So what about individuals?

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What the chart is saying here is that best case, the average household will be worse off by £850 each year. Now using a mean average, that’s not every household hit, but the ones who feel it most tend to be those on the lower pay scales, and for some full time workers, that could equate to a months wages. That’s one hell of a hit for a best case scenario (with worst case losing over 2 months wages).

I want to be unbiased, but being presented with these raw figures is enough to sway me very much one way.

Question: If we leave, what happens to the human rights act?

Her: well we would have our own version of it. We created it after all.

She’s absolutely right there. The UK was at the forefront of creating the human rights act.

An interesting look which appears to give an unbiased before & after in the Telegraph writes

However any decision to withdraw from the Convention – a move the UK could make now – is likely to have a significant negative impact on the UK standing in Europe, the United Nations and the county’s moral authority around the world.

So the lady was correct, a Brexit doesn’t automatically mean we drop the convention. But, it does lean toward withdrawing as there is less pressure.

There have been a string of high profile cases where human rights have made things awkward, but there must be some good it does if we signed up?

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So, being selfish here:

Article 2: a right to life – no matter how crapped out I am, you can’t force me to die because I’m a burden.

Article 3: a right to not be treated in an inhumane or degrading way… and here I asked her about PIP. Is this humane?

Her: No, not at all. Those dreadful interviews are being carried out by a French company (she’s referring to ATOS here) and ruining disabled people’s lives.

I fear she rather missed the point…

Article 4: all I’m putting here is the Work schemes.

Article 7: benefits sanctions – a punishment, but we’re they breaking the law by missing an appointment by being at work/ at an interview / too sick to get up….

Article 8: my ISP holding my browser history. My personal messages to my husband no longer using end to end encryption…

Article 9 & 10: Facebook photos being used by DWP to “proove” people are well. Me being worried about blogging my experiences with DWP in case there were repercussions (a genuine fear of being rejected because I was openly negative about the process).

Considering the points above & the cuts in disability assistance made by this government and also when they were part of a coalition, it’s not a great surprise, but should be a great source of shame that the UK is the 1st first world country to be investigated by the United Nations for violations of human rights with regards to the treatment of people with disabilities.

Interestingly, we barely touched on immigration  (I had been keen to know what would happen to all our 5 million EU ex-pats), and we parted very on civil terms, agreeing to disagree.

The Leave vote continues to scare the living daylights out of me, but I appreciated the calm & dignified debate and if nothing else, that lady sparked a political flame that reignited my interest for actual facts rather than a gut feeling. I may not be voting her way, but I will vote with my head & heart.

Maths & Empathy Lessons for Politicians

There’s been a bit of a hoo haa on Twitter recently over the changes to how opiate painkillers are prescribed in the US. Not unsurprisingly, it’s left a number of chronic pain suffers rather nervous. And not just in the US, but over here in the UK where we have a distasteful habit of following on America’s heels like a irritating younger sibling.

There’s a lot of political bluster about the whole thing and lots of statistics being used to show what a terrible problem opiates cause. But I have some questions:

Opioids (including prescription opioid pain relievers and heroin) killed more than 28,000 people in 2014, more than any year on record. At least half of all opioid overdose deaths involve a prescription opioid

– CDC

Firstly, there were 318.9 million people in the US in 2014, so 0.0127% of the population died of opiate related causes. And 0.00639% of the population died from prescription based drugs (we can assume the rest were illegal…). Of this, how many were accidental or addiction related overdoses? No? Ok. How many were deliberate overdoses?
Is this a drug problem, or a mental health care issue?

Ok, let’s keep going with the maths (basically because maths is amazing)…

In the same year, there were 13000 gun related deaths. So put side by side:

Prescription Opiates: 0.006%
Gun Related: 0.004%

Now neither of these figures takes suicide & accidental death into consideration, but one has a potential to be used to help those with terminal illness (Just for total clarification, I’m referring to the opiates), so there is the potential statistically that the numbers are skewed as how were those deaths classified? But also, why is the 0.006% an epidemic that must be crushed, but 0.004% can only be solved by introducing more of the metal things killing people?

Ahem, a quick interlude for a nod to ‘Guns don’t kill people’. (Also, US friends – check out their alternate song, Your mother’s got a penis. You’ll thank me)
https://youtu.be/ICG0MuzEYzw

Right. Now that’s done…
Why are people so pissed off by politicians telling chronic pain patients no more opiates? Well, their carefully thought out alternative is over the counter drugs like paracetamol.

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Now before telling me that I probably just need a paracetamol because pain is mostly mental, I’d like you to yank your finger out of its socket. (We’ll start small). Hurts doesn’t it? Have a paracetamol.

Give it 24 hours. Now yank your elbow out. No, actually dislocate it & tear some muscle for good measure. Different arm. Take a paracetamol. And keep working. Don’t expect any handouts. That’s just laziness.

Same day, shift your hip out of its socket. Not all the way, but enough to grind bone against bone. That’s a big one, so you can have ibroprofen & an ice pack.

Next day… You’re not healed? Aw… tough. Go to work. Your spine shifts out. Paracetamol.

Next day, out goes the knee… am I making my point yet? I haven’t even got to the internal organs, muscle spasms, co-morbid diagnoses, & CRPS. It’s crap. The very fact that opiates make my general pain levels bareable means that I continue to be a productive member of society albeit on wheels & a bit wonky. Your alternative is a screaming mess.

This week one of our online EDS community took her own life because she couldn’t go on with the continued pain. She was 23. I’ve found myself several times this week staring at my phone & wondering if there were any signs that we could’ve spotted, or more support offered. But constant long term acute pain does that to you. It makes you stir crazy & pushes you to the point where you just want a break. Her death sent ripples of shock through many communities and it hit home how close some of us are to just saying enough. It would be easy to blame the conduit for her passing – it’s a tangible thing to blame. But the root cause was unmanaged, daily & unrelenting pain. I wish she knew how her loss has rippled through people shed never even met and that each of us empathises and wishes her peace now without any judgement as to why she didn’t fight longer. 

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I think the laboured point I was trying to make there is that you can’t have it both ways. Pain relief, or productivity. With sufficient pain management, we have incredible potential, but left to ‘man up’, there will be more like Sarah.

And how horrendously offensive to casually place people with chronic pain taking controlled drugs in the same category as heroin addicts taking Street drugs cut with God knows what. That’s not just sloppy science, that’s bad maths. And there’s no excuse for that.

Bad show America. Very bad show.

Electric Dreams

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I’m an 80s baby, and as such will always sing these words with a muffled hum for the rest of the lyrics and an image of the film playing in my head. But why the bog title? Well, Sunday night is brought to you courtesy of the TENS machine (again). Despite all attempts to have a restful day today after yesterday’s escapades, my left shoulder took offense and tried to leave home. It’s usually my right one that pops out, but there’s nothing like a surprise sublux to end your weekend. EDS likes to keep us on our toes. As is usual for recent weeks, dihydrocodeine has little to no effect above standard baseline pain, & oramorph is barely touching it. We tried massage to help bring down the muscle spasms that are creating almighty knots & the end effect of that was Mr Geek hurting his fingers. Ice would reduce the swelling, but make the muscle knots worse, & heat vice versa, so TENS is the next option in the toolkit.

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One pad on a bicep, one on tricep from the grey channel, then one along the shoulder tendon & one just inside the shoulder blade (where the knots are) for the white channel. The pain Management team have suggested a bespoke setting of 100hz frequency & 200uS pulse width for 90 minutes at a time. As a general rule, the following settings are worth having programmed into your machine (all using 170 – 200uS depending on what feels right for you):

80 to 120Hz-acute pain

35-50Hz-muscle stimulation

2 to 10Hz – chronic pain

I’m using the acute pain setting because I’m using it for breakthrough pain where I’ve reached a decent 8 on my pain scale. This is also known as the ‘Fuck me that hurts. Hand over the drugs.” pain stage. On a scale of 1-10 this renders me incapable of doing much else than asking Mr Geek to rub my [insert body part] and clock watching for dosage times. With a decent TENS session and break through drugs, I can usually bring the pain down by 2 levels. This means I’m currently sat at “Not sleeping, but at least I’m not screaming.” level. Don’t look for pain scale facial expressions here – 9 & 10 get scrunchy faces & farmyard noises. That’s it. I’m a bloody zen master at breathing away pain facially.

This is all very irritating after having such a positive day yesterday. To help strengthen my upper body, I’ve been training (and I use that word as loosely as my joints) with a local wheelchair racing club for a few weeks. I’m fully aware that my lower half is past the point of no return. I have little feeling left in my feet & the lady areas are steadily going numb (That’s a whole other post) – and yes, I’ve flagged this up with more doctors than you can shake a referral at, but the regular limb detachment has been prioritised. So, I’m determined not to allow my arms the same option of defeat as my legs, and as such am building up the muscles to do the work of the crapped out tendons & ligaments.
Cue me being lifted into a paralympic style racing chair twice per week, strapped in and pretending that this doesn’t hurt in the slightest.
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The coach is lovely & works on the basis that we know our bodies, so you go to your own comfort level & adapt the chair, pushing style, & seating position to however your body works. As it turns out, mine needs to lean forward to take the pressure off my back & put less pressure on my shoulders, so we’re tweaking the club’s chair that they’re letting me use each session to get it right. For me, pushing down on a flat surface with no inclines or cambers, means that I can self propel. My lower spine still shifts every session, my SI pops as I get out, my elbows still give out if I get pushing wrong & my shoulders will not accept arms lifting up or out, but I’m finding my style. It’s slow, it’s slightly wonky, but physio isn’t meant to be easy.

Pros:
– I’m building muscle on my arms & core
– I’m outside twice a week
– It’s social
– I have a whole hour where I don’t need help
– feeling of freedom. Like running.
– Massive aerobic high
– Long term – possibly improving POTS

Cons
– Extra bruising from wheel guards
– Pulled shoulders from pushing too hard too soon
– Pulled elbows as biceps get tighter
– skin worn off on fingers (forgot EDS skin & friction doesn’t mix well. Cure: cohesive bandage wrapped over gloves)
– Getting cold outside (Then cramp!)

Ultimately, if it allows me to maintain where I am right now without any more spirals down, I’ll be happy. This is the first on land exercise that hasn’t injured me substantially more! And Mrs Physio will be super impressed at my efforts to get off my arse… or at least get my arse moving.

So here’s to my favourite two pain relievers right now: adapted exercise & TENS.

Here’s another table of possible settings with some handy explanations for use from NaturesGate

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Live to work, or…

At the start of the week I commented to the lady who drives me back & forth to work that this term doesn’t feel as long as last. After a week of migraines, popped out shoulders, & cold limbs, I take it all back. I’m not wholly sure how I’m going to drag my wobbly aching carcass through another week of this. EDS has once again knocked me flat on my arse. My current days are going something like this:

6am
Mr Geek wakes me up by stroking my back, then helping me stretch out & rubbing my feet & legs until I can tolerate using the crutches to get to the loo. Then he gets out my clothes and helps me get dressed (all the while discreetly checking that I’m not going to topple over from a limb giving out or just plain potsy fainting).
Right now, mornings are hard. I wake up feeling like I’ve been hit by a bus & am making it to work not through guts & determination, but because of Mr Geek physically moving me through my morning routine & fear of losing my job. Even the idea of cutting my hours puts me on edge – despite the potential for feeling physically better and actually getting to spend some time with my offspring, not being full time makes me more dispensable & if Mr Geek stops working from home, there’ll be zero buffer against people talking at me (no rest potential there – may as well be herding kids).

6.30am
Sat on the side of the bed, Mr Geek brushes my hair into a sock bun whilst I attempt to plaster my face in enough self-tan moisturiser, concealer, eyeliner, and contour the living crap out of it until it submits to looking human. Final touches – my headscarves to protect my hair from breaking, because although it’s looking healthy again, it starts matting & breaking the minute I leave it out.

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Mr Geek saves the morning yet again here surrounding me with my baskets of morning drugs & make up. He doesn’t leave me until everything is in reach.

7am
Down the world’s slowest roller coaster to my chariot awaiting me at the bottom of the stairs. It’s a work day, so it’s The Beast. The powerchair is necessary as 8 hours+ of self propelling is arm rippingly painful.
It’s weird, the powerchair is built specifically for me, but I’ve come to resent it. I’m passive in it. In utter contrast, Leonardo (my manual) is an extension of me.
As I get into the kitchen, Mr Geek hands me coffee & hot milky weetabix which perks me up enough to kiss the kids goodbye and wheel myself into the taxi and off to work.
I don’t want to be leaving the house right now. I want to crawl back into bed & rest my bones that won’t hold me up. I want to cuddle up to Mr Geek and giggle over my snap crackle and popping joints when he cuddles too tight. I want to sleep. But, instead I put on a big smile & say good morning in my Oscar winning performance as girl who is coping.

7.40am
Off to work. Bones rattling. Pain levels increasing. The chair is strapped down in the van, but I am not. I wobble freely over the hill wincing at the cattle. We’re both headed for vets soon.

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It's not a terrible view on my commute

8.15am – 4.30pm
Holy hell in a handbasket. There’s a blur of 100+ students, marking, worrying, patrolling of corridors. They ground me & remind me that my little whirlpool of pain isn’t the whole world. There’s other shit going on & if I don’t vacate my pity party right now, I have a shit-tonne of kids to dissapoint. And that’s not going to happen. They couldn’t give 2 hoots if I’m on my feet, in a chair, doubled over in agony, they need entertaining & their little sponge minds filled with the stuff I’ve got. Life goes on.

There’s also a rising tang of pain that exudes from my hips and hands and across my body. Painkillers and work don’t mix well, so let’s suck it up for a few more hours…

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5pm.
Home. Kiss kids.
Lay on sofa. Oh God my head / joints / back / [fill in the blank].
Nap.
This is probably the most restful hour of sleep of the day. It’s delicious.

7pm
Wake up to Mr Geek trying to talk to me and waving food in my general direction.
Then straight to bed & set the bed incline to sat up with raised feet whilst blogging / watching TV until the evening drugs kick in enough to let me pass out again.

To sleep. Per chance to dream.
I wish I could sleep.

It’s a miserable way of looking at my days, but it’s my reality during term times and it becomes a harsher reality as the term goes on. This half term is 7 weeks, as is the next one. Most holidays I’ll keep working from home to stay on top of things, but this half term I’m planning to rest.
I’m not wholly sure what the long term goal is now. Right now, what we’re doing is just about physically surviving the week, then treating every weekend like it were a tiny holiday (and getting mightily frustrated if time is ‘wasted’ not making the most of our down time. Ironic eh?).

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Life In A Cage

I had a bit of a strop today. Not uncalled for, but stressing over something I can’t do a great deal about with immediate effect.

Yesterday, the plan had been to grab the bikes and head out for the day. Mr Geek decided that buying the new roof rack for the bikes was on the cards as the old one takes an age to put on & isn’t entirely stable. He would only be an hour getting that and lunch, so I supervised the kids getting their swimming stuff together & cracked on with the last of my marking. An hour later he returned triumphant & we had lunch… then waited. After 2 hours, I was going stir crazy. The kids had returned to their room or were whizzing around the garden on their bikes. And I paced between the kitchen & conservatory like a caged animal.

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Why? Because having busted a gut getting us all ready, I have to wait for Mr Geek before I can leave the house. I can’t get out the back door at all & the front door requires an able bodied person to put down our portable ramps. So I’m stuck. In the end I slouched on the sofa & read my book, then had a nap as I’d worn myself out being pissed off at not being able to reach the good weather aside from leaning precariously out of the door to just breathe in the air. I’ve tasted a bit of freedom now & I’m not keen to go back inside my box.

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Today took a similar turn, with me being perfectly happy to visit with in laws (I really enjoy their company – how many people get to say that eh?), but plan A was scrapped so we came up with plan B of visiting, then some family outside time to de-stress everyone. Having explained that Beanpole was stressing about the looming SATS that start tomorrow & I’m stressing about expectations to make the kids revise; This combined with explaining that sitting still in my chair is causing thunderous pain, but propelling allows me to engage my muscles and fight it off for a bit. So we gathered bits from the shop on the way over & sat still in the sun for over 2 1/2 hours. The net result of this was no time for family outside time as I couldn’t pluck an accessible alternative out of thin air, a bastard of a backache, and bright red shoulders (guess who can’t feel the burn over the nerve pain. Silver linings…). Eventually, instead of brooding I said something. What was heard was “I’m angry because I didn’t do what I wanted today”. I didn’t explain it properly & I apologised for being grumpy. Then took that feeling, screwed it up tightly and shoved it in a mental box. Except that box is full & wont close so I wrote a blog about it to remove it all from my head & keep it sealed up tight. I’m angry because my voice wasn’t heard, I’m angry because I have no physical freedom & feel like I have to doff my cap because otherwise I’m fucked.

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That in itself makes me feel even more trapped. In that way it’s a double whammy because not only do I have to wait until someone else is ready to help me, I have to be constantly grateful and keep my temper. Most normal adults have the option of walking away to cool off, or frankly, walking. How exactly am I meant to do that when I reach the front door & face the prospect of faceplanting if even attempt to get my wheels over the threshold?!

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So here I am, working through it all in my head and realising that I’m not actually angry with Mr Geek; I’m living for the weekends when life is about my important people & when I spend most of that time waiting for them to want to engage with me, I feel hurt. They are my important people. I came second to Pintrest & a bike rack (TinyPants, in her defense, recognised the caged animal thing & read me Grimms fairytales even though she proclaims to hate reading, but she knows I love to hear her read). I’m reacting like anything that once roamed & now has a cage put around them – I’m on constant fight or flight on the off chance that I see an escape. This combined with pain means no sleep. No sleep means bad temper & more pain. And so it continues.
I’m resentful that I now have to sit in that bastard bloody powerchair and crush my spine & pelvis for another week to smile & cajole like a tortured CBeebies presenter, kids who now outrightly ask why I can’t just do their coursework for them, or threaten to bring parents in when I don’t grade them high enough (I do love my job – this half term is always particularly tough. This year moreso than others). However, I’d rather be there to collect my stressed out offspring & feed her ice-cream until she forgets about the exams.

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As with most things, I don’t just offer problems, I find solutions, and here’s my first offering: A customised Google Map for those of us who need a bit more info on places we could achievably get to or get around. I’ve started adding the places we’re visiting & maybe you’d like to contribute? As a crowdsource, we could create an awesome free resource! Just drop me a twitter message @WorthingWeb with your email or leave me a message below.

My Accessible Google Map

The next has got to be rampage. As in ramps, not going on a rampage. Without access to anything outside the house without help, a rampage is going to be quite ineffectual. But if I continue to feel trapped inside the house, there’s going to be an issue. More than just me grinding my teeth at night and sleeping even less than usual. Either I’ll get pissed off and start making my own solutions like bum shuffling over the threshold then dragging the chair after me, or I will mount a protest by refusing to go inside. The latter is pretty much what my old cat did. The fact that I’m considering taking protest cues from a deranged and not mildly psychopathic ball of fur, teeth, & claws ought to be saying something.

I’m asked a lot at various appointments about my physical symptoms & Mr Geek is more often than not asked how he’s coping. Only very occasionally do professionals ask with any actual interest how my head is. God forbid, I might tell someone the truth one day and tell them that I was a real tiger once, but now I just pace back and forth between the corners of my strange cages.

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Ehlers Danlos Syndrome (EDS) Awareness Month

Awareness comes in many forms. In the case of a rare genetic condition, this can be both positive & negative. Surely, I can hear you say, there’s no such thing as bad publicity. But when it comes to a diagnosis, there can be.

May is Ehlers Danlos Syndrome awareness month & as part of that, here’s my two penneth to add to some already outstanding posts. (Be warned, this is more the ramblings of an insomniac waiting for the next pain relief window!). It’s taken me a few nights to write this as there’s an awful lot to get through!

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Along with a number of other people, I’ve come up against that Rheumatologist who decides that he knows better than the specialist consultants. That one (generally older) doctor who sits back in their chair and regales you with tales of how certain diagnoses are “in fashion” and a private consultation will of course result in a diagnosis because you paid them. They make you doubt your own diagnosis even though you know your body best & they met you 10 minutes ago. At best, these doctors are breaking the hippocratic oath by following their own agenda instead of doing no harm, at worst they’re downright dangerous.

Even in support circles for EDS, there is a disturbing undercurrent of symptom competition – I’m much sicker than you, so you can’t complain. In doing this we don’t help ourselves. Support online is about being there for anyone on this unpleasant spectrum. And understand that we all have our personal pain scales – a 10 for me may be a 7 for you, or conversely, you may be unconscious by my 7.

My own experience of EDS differs from other people’s as we all experience symptoms on a spectrum. I have a diagnosis of EDS type 3 with classical (type 1) crossover because of my weird skin.

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My main daily issues are that my limbs refuse to stay attached to me. EDS itself is not degenerative. However, it appears so as each new dislocation or injury leaves more scar tissue, or joint damage, creating pain & disability. No one entirely understands us, and there is an awful lot of stories of our conditions taking a sudden nose dive after an illness or accident (mine included). During a flying visit from Mrs Gypsytree this weekend, my daft Sherlock said how she remembers coming over for her final goodbye evening whilst I was suffering with viral bronchitis (and coughing ribs out of place). It was shortly after she left for Ireland that I went waaay downhill & she’d wondered if she’d just left me to rest if all this wouldn’t have happened. Oh Sherlock, you don’t control my collagen or genetics. Although it is your fault that I have to argue with Easyjet on a termly basis to come and visit. Because even sticking me in a chair then moving 600 miles away doesn’t let you off the best friend hook.

Having been undiagnosed for over a decade since real chronic pain set in, I caused permanent nerve damage in my pelvis & back through following physio for “normal” people after 2 prolapsed discs, several more bulging discs at multiple levels, & dislocating my pelvis. I pushed through the pain not realising that actually I was making everything worse. Fast forward to now with me as a full time wheelchair user & my pelvis and hip sublux daily, my knees twist and both patella move freely, my ankles turn in and that’s just my lower half! Pain is a thing that just is. Stuff pops out. We put stuff back on. If we didn’t, I’d live in A&E. Why cause more X-rays when we can fix me like Lego?

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It’s not just the bottom half. Most of the time I use a powerchair, but I’m keen on using my lightweight manual around the house & at weekends to build up the strength in my arms. Just by doing this small amount of exercise means that my shoulders may stay where they belong more often! The flip side of propelling is shifting ribs – this morning was a good example of this. Eating breakfast, I realised I couldn’t breathe because of a horrible sharp pain in my sternum. Placing my hand on the outside of my ribcage & pushing, I felt (and heard) a clunk as the rib popped back in. Grim eh?

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Ah the shoulder knots. The hours that Mr Geek has spent digging his thumbs into those stubborn knots that just won’t bugger off… muscle knots do have a special name that slips my mind right now (edit: trigger points). But they are tiny bits of muscle that were tense then forgot to stop being tense and cling onto a bit of lactic acid and become a hard lump. When squeezed, my shoulders feel like they have rice in the muscles and like any muscle that are constantly tense, it aches & causes tension headaches. Again, exercise helps, over-exercise hinders. I’ve not found that fine line yet.

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A perfect example being today. It’s Saturday, the sun is shining, the tank is clean… I woke up knowing we’d planned to take the bikes down along the prom and cycle to the local pool. So double whammy of sunshine and floaty floaty pain relief. I managed the whole thing on minimal pain relief (and a lie in & nap in the morning), then we got home and after dinner BAM! I’m freezing cold & exhausted & my legs feel like I’d actually cycled instead of using Leonardo (my super awesome wheelchair electric bike). I messed up my pacing today, but it was utterly worth it. Check out that wonderful blue sky!

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A nod to my tiny babies in the gif above. We had no idea why my pregnancies were fraught with issues, from SPD to full dislocation, to my waters breaking at 35 weeks, then TinyPants at 32 weeks to the day. You’d think with an extra stretchy body, labour would be easy, but oooh no. 52 hours of making farmyard noises, then an emergency c-section because her massive head was stuck in my wonky pelvis! Then healing from a c-section. Which isn’t meant to go ‘stand up after 6 hours & stitches rip through you like cheesewire’. Also, ow.

It’s all forgotten now though…. ish.

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Oh yeah, and that epidural I screamed for? Didn’t entirely work. I take an awful lot of painkillers these days, & I’m remarkably coherent for someone who maintains sanity with morphine. This was illustrated when an ovarian cyst ruptured one of my ovaries. The surgeon conversation went a bit like this:

Me: arrgh!
Doc: But we’ve given you morphine, you shouldn’t be able to feel that.
Me: but I bloody well can! Are you sure that wasn’t just water?
Doc: No, you clearly can feel that. Weird…
Me: go away until you’re qualified Dougie
Doc: could someone call an anaesthetist?

I feel bad now for being mean, but at the time I was having my rapidly dissolving ovary poked with some force.  Of course they thought it was my appendix at the time, but we’re baffled that it took enough sedatives to chill out a sumo wrestler for me to stop squealing.

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As a general rule, I do try to be a nice person. But like anyone, I have a pain limit. Or rather I have particular pains that drive me more crazy than others. The one that is guaranteed to turn me into a howling banshee is TMJ pain. It’s the jaw joint & muscle. Sometimes it pops out, other times I clench my teeth without realising and the joint pain feels like the worst wisdom teeth pain. It makes all of my molars hurt & causes immense headaches that just sit around my temples and make me with PMT look like Julie Andrews.

It helps to try mindfulness and focus on relaxing the jaw and allowing the muscles to stop being is spasm. The flip side of this is looking less intellectual than Donald Trump.

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It’s not just the jaw that takes a battering. But the teeth & tongue. My teeth have always been crowded at the bottom, and they move on a monthly basis, but I’ve learnt to smile in ways that hide them.
My tongue is particularly hypermobile  (I know fnar fnar), but actually what this means is I can touch my nose with my own tongue (known as the Gorlins sign), but also lose control of it regularly and bite it. I have to think when I chew, not talk!

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My sleep patterns suck. I’m in bed early evening without fail, but blog and read and Facebook and tweet as vwhilst my body is shot, my brain is having a party!
Who knows where these weird sleeping patterns come from, but it’s possible that other linked issues such as POTS or general dysautonomia play a part here.
The bags under my eyes play witness to the fact that I’m unrested!

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And after all that self indulgent whinging about how much EDS sucks, you know what? It’s not all that bad. Most (not all, but remember this is a spectrum), with the right support from a knowledgeable team, and ongoing support from Occupational Therapy and Physiotherapists can live an adjusted but still fun life. Mobility & living aids are just that, they help make life easier and there’s no shame in using them if and when they help. Leonardo (the wheelchair cycle) may be great for getting me out into the open, but he’s also improved my state of mind tenfold.

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I can’t praise my OTs enough. Out of everyone, they’ve looked for solutions & told me that they’d kick my arse if I thought about giving up. We’ve both agreed that my pain levels sky rocket whilst I’m working & level out during the holidays. We’ve also agreed to say bollocks to it and do everything in our power to keep me working. If only for Mr Geek’s sanity. If I was at home, I would drive him up the wall!

They think of him too. After all, he’s the one who gets me up, helps me dress, gets the kids ready, cooks us food, and holds down a senior code genius job at the same time. This week my lovely OT ran through the standard checks with him that he’s ok & are we sure we don’t want a carer. I remain in awe of Jo Southall, a fellow EDSer and trainee OT. Talk about using what you know!

So there it is. A few snippets of my own experience of EDS. Life isn’t over when your joints say it is. There are ways to reduce the degree to which you are disabled, not by changing your body, but by adapting your environment and taking care of your head as well as the strange stretchy housing that your head lives in.

So from me. If you know someone with EDS, give them a gentle hug from me 😉

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